recurrence after DCIS mastectomy

RoseMamma, I am so sorry to hear about your recurrence. It's hard to believe that it can happen when we go to such great lengths to get rid of it.  Do you know the stage yet?  I had trouble even finding an oncologist to follow me because no one will recommend regular imaging (one onc even suggested that they would just find cancer somewhere else and I would just get mad -- wha???).  My oncologist is checking up on me every 6 months and just said to let him know if my bones start to hurt.  

Thank you for this sentence: "People who minimize those who have DCIS need to read my story."  When it's "only DCIS" we still have to deal with the possibility of recurrence without all of the monitoring tools that are used for higher-stage cancer.  Granted that I still feel fortunate that my DCIS was found before it became invasive, that 1-2% (or higher based on my Van Nuys prognostic index) is not 0.  I wish you the best in your treatment!

Rosemamma thank you for posting your story. Did you have nipple-sparing? Where exactly was your lump??? I had DCIS stage 0 (intermed.) too-but I have noticed some odd lumps under my R nipple and above my implant. I am trying to find info on imaging post mastectomy and this post caught my eye. R breast was my cancerous breast; (ER/PR pos, HER2 neg, BRCA 1/2 neg), but was all the way down my duct, but far enough away from my nipple that my BS felt it safe to do nipple-sparing. I worry about recurrence, albeit low. I was already part of the 20% that lumps are positive.....I wonder though that it may just be scar tissue, fatty tissue, or the implant itself as I cannot feel much around my nipple anyway (still quite numb). sigh. I worry, but then I feel a bit silly going back if it's nothing. I already feel like I am taking up a valuable appt slot when I go to the oncology clinic.  

I hope all is going well for you, and THANK YOU so much for posting your story. Very important. 

I had the very same issue, v2014. I had a superficial margin less than 1mm, and my surgeon thought it was no problem. He said that lumpectomy margins & mastectomy margins are two different things. I was concerned about it so, when I had my revision surgery, an area of skin around the close margin was excised. Nothing was found and it was a big relief. The surgeon told me an interesting story though. He said that he had thought it was impossible for DCIS to be in the skin since it is, by definition, restricted to the ducts. But a colleague showed him imaging of microscopic ducts containing DCIS that had grown into the skin layer. He said it greatly changed the way he thought about DCIS and wondered if this phenomenon contributed to recurrence. I'm not sure how helpful all this is, but I wish you the best on making your decision.

LAstar, see what I found in net:

http://www.faxitron.com/sites/default/files/pdf/In...

"Close margins occur in a minority of patients undergoing mastectomy for DCIS and is the only independent risk factor for LRR. However, given the low LRR rate for DCIS treated with mastectomy with close margins, which is less than the rate of the contralateral breast cancer development, PMRT should be reserved for patients with multiple close/positive margins that cannot be surgically excised."

I think, No RT. Thanks.

Rosemamma88, thank you for sharing your story and initiating this conversation. I hope you are doing well now and were able to enjoy the holiday season. Luckylegs64, so sorry to hear about your recent reoccurence and hope everything goes as well as it possibly can for you with the chemo.

I was diagnosed with DCIS Stage 0 in Oct 2012, had bilateral mastectomies in Dec 2012, then did radiation in early 2013 due to my clear margin being only 1mm. Tamoxifen was not recommended and I was grateful for that. I finished reconstruction on 11/25/14 (what a LONG process that was!) to be told the VERY NEXT day I had noninvasive Paget's disease.

I was mad...I was supposed to be done with all this! And, then, the confusion started because Paget's is a breast cancer of the nipple - which I had removed and my skin lesion is a couple inches away from where they used to be. - and it usually presents before a mastectomy and/or radiation. My breast surgeon, radiation oncologist and plastic surgeon had never seen it. After asking around, a couple other local oncologists hadn't either. So, I decided to get a second opinion at the Mayo clinic in MN. The diagnosis was confirmed and same course of treatment recommended. I will have it excised on 1/6. I am hopeful that it will all prove to be noninvasive. I am just frustrated to being going through all this again. The same sentence that others noted rang true to me, "only DCIS" we still have to deal with the possibility of recurrence without all of the monitoring tools that are used for higher-stage cancer. ". I am also done with asking friends to go to appointments with me or be my driver. I am an independent woman and hate having to ask others for help.

Sharing my story because it is kind of rare and hoping to find some other women with Paget's.

Rosemamma88,

My BS said I needed radiation because she couldn't get 2mm clean margins. It wasn't part of the plan before my mastectomy but the cancer was too close to my skin. I waited until my tissue expansion was done then started radiation. The radiation delayed my implant surgery, unfortunately, but I suppose necessary to allow any skin changes that may have occurred. (How I hated those expanders!) My plastic surgeon is very pleased with the results, sometimes forgets that I had radiation when he is just admiring his handiwork! I am overall pleased, too. Having the nipple reconstruction and tattooing made the biggest difference for me. I am not at the point were I don't think about them not being real on a daily basis. I have heard other women further out do so I still hold out hope.

I understand your concern about not wanting to do radiation. When this all started for me, I remember being told that it is not advisable to do radiation after reconstruction. My story is probably different since I was in the middle of reconstruction and it wasn't completed.

You have been through so much yourself! I hope it all stops with the Herceptin. ENOUGH ALREADY!

Hi Rosemamma,

I was diagnosed with DCIS in last October. It was big 13 cm so I had a mastectomy in my right breast they found 2 positive lymph node and they didn't find any invasive cells in the breast just dcis the tissue went to another lab and they didn't find invasive cells too they are just I in he lymph node out of. 4 doctors 3 suggested chemo I finished two sessions and still have two then tamoxifen for 5 years I still have pain I n my healthy breast in the same time every month even that I lost my period and the chemo should decreases my hermons the pain scares me because before my diagnosis I had this pain for years God bless us all

Rosemamma, I'm sorry to hear of your difficulties. I had a mastectomy for DCIS in 2000. My BF found a lump under my scar in 2009. On biopsy, it turned out to be some of my original tumor cells, now turned invasive and growing into my chest wall.

They did scans on me to detect distant mets, which they did not find. That made me stage III and not stage IV. My surgeon removed my lump and some surrounding muscle tissue, going down to the bone in one spot. He also took out 10 of my axillary nodes, of which two were positive. After surgery, I had two kinds of chemo, then radiation.

My treatment took about a year. It pushed me into menopause at age 42. The node removal and radiation made my lymphedema worse. But I'm still here, NED, five years after my second dx. I wish you clean scans, a skilled surgeon, and not too bad side effects.

after20years, we are really sorry to hear about all you are going through now. You'll know much more when you have the answers from your treatment team. Please keep us posted, and know you are not alone (p.s. this tread has been inactive, so you may want to also post elsewhere).

After20years, I am so sorry to hear of your news. I hope you can find an effective treatment that complements your rich stimulating life.

My doctors told me that I had a 1-2% chance of recurrence after BMX. The Van Nuys prognostic index put it at more like 10% given that my DCIS was high grade, extensive, and occurred when I was 42. There are no monitoring tools for us at this point. I have reconstructed breasts so interpreting imaging is tricky. I've even had trouble finding an onc that will follow me. Several have told me that I didn't even have cancer and pooh-poohed my concerns about recurrence. Others have told me to come back if my bones start to hurt. We are sort of caught in between after a DCIS diagnosis.